Jim Slosiarek/The Gazette Richard Bice of Marion, holding a portrait with his late wife, Carolyn, has been named Iowa Alzheimer's Association's 2017 Advocate of the Year. His wife died of the disease in 2013, and he spent 11 years as her caregiver in their home.

Advocacy started with wife's diagnoses, extended to others

Certificates of appreciation and congratulations for jobs well-done from the Optimists, Toastmasters and politicians line the walls of Richard Bice’s Marion home. Nearby bookshelves share space with photos, memorabilia and even his Woodward High School athletics letter and medals.


One item that has a special place in his heart, however, is the Alzheimer’s Association Advocate of the Year trophy awarded to him March 9 during the Alzheimer’s Advocacy Day at the State Capitol in Des Moines. Bice was selected by both the East Central Iowa Chapter, based in Cedar Rapids, and the state-level Greater Iowa Chapter that serves 85 counties in Iowa and Illinois.

It’s the first time the award has been given, and Melissa Pence, executive director of the East Central Iowa Chapter, can’t think of a better recipient.

“He’s been a joy to work with,” she said of Bice, whose smile lights up his face and reflects the way he’s lived his life for nearly 85 years. “He’s raised the bar pretty high in terms of trying to advocate for our case. He’s been one of those connectors that has helped us share our story, not only in the community, but with our legislatures at both the federal and the state levels, as well.

“So whether that’s advocating for change for dementia care education here on the state level or if it’s increased research funding on the federal level, Richard has been certainly that advocate who’s not afraid to go into our congressional district offices and make that request.”

At the end of March, he will be making another trip to Washington, D.C., to see the Congressional leaders during the Alzheimer’s Advocacy Forum.

“Of course, he brings his personal story with him,” Pence said.

HITTING HOME

Like every other cause in which Bice is involved — from being a past state president for multiple sclerosis and muscular dystrophy associations to recently forming a new metro area Optimists group — when his late wife, Carolyn, was diagnosed with Alzheimer’s disease in 2002, he threw his heart and soul into caring for her until her death at age 79 on May 3, 2013. They had been married 57 years.

“I took care of her for 11 years,” he said. “We made a vow to each other to never go to a nursing home.”

The physical part of that pledge was easier for him to keep, since she was light enough to be carried when needed. That would have been impossible if their roles had been reversed, he said.

But being a caregiver is never easy, and after using a succession of volunteers and health aides to help while he was at work, in 2008, he sold his insurance business to son Tom, and officially retired to be home with Carolyn. He did, however, continue to schedule periodic three-hour breaks for himself.

He started every day with this prayer: “O God, help me understand that it is the disease, not the person.” And every day, he reads the Optimists creed, which also brings him peace.

Upon her death, Bice channeled his energies into advocating for others facing Alzheimer’s. He and his wife felt alone, with no one to guide them through the mine field they faced after an initial diagnosis was confirmed at the Mayo Clinic in Rochester, Minn.

“We sat in the parking lot and cried for an hour,” Bice said. “It really is a death sentence.”

Then reality set in.

“I was totally appalled by how little we knew about what we were fighting,” he said. “There is no cure — still isn’t. But by gosh, we’re going to get that changed.

“But we do now at least know the steps we go through with Alzheimer’s in the final phase. Like with Carolyn, she never said a swear word in her life, but in the last year, boy, she taught me some,” he said with a laugh. “I don’t know where she picked them up; that’s what bothered me.”

Signs along the way pointed toward something being amiss. After being the secretary in her husband’s insurance office for 38 years, Carolyn came to him one day and said she couldn’t do the computer programs. Then when he followed her home, he saw her veering over the white line. “It didn’t mean anything to her,” he said. And later, she said she wanted to quit the choir she loved at their church home, First United Methodist in Marion, because she was having trouble reading the notes.

“It’s a lot of little things you never put together until you look back,” Bice said.

So when it was time, he set about organizing their lives to meet her needs. He drew upon his education in livestock feed and nutrition management at Iowa State University to come up with a dietary plan to ensure she had 2,000 calories a day. He kept her dry by checking every three hours, so she wouldn’t sit in urine that could break down her skin. And he kept her moving — on her feet, from bed to chair, or by shifting pressure points — so she never developed bed sores during all 11 years of home care.

Sweetest of all, they listened to music during meals and for half an hour afterward, and continued dancing in the living room on Saturday nights, by “firing up the bubble machine,” listening to Lawrence Welk reruns on TV. “Even at the very end, her toes would move to music,” he said.

LESSONS

“I learned a lot,” he said, through research, trial and error. Simple things, like putting a black mat in front of doors to prevent patients from wandering outdoors.

“They think they’re holes,” and won’t step on them, he said. “I learned that in Russia.”

Their hotel had a black marble floor, which she refused to walk on, so he had to carry her to the elevator.

In retrospect, that trip probably wasn’t the best idea, he said. “But you gotta do dumb things to appreciate the intelligent things.”

Other tips he discovered:

— By turning around interior door handles, Carolyn couldn’t lock herself in a room.

— Installing motion-sensitive lights calmed her fear of the dark.

— Printing up cards to give to waitstaff, explaining why he would be doing all the ordering, erased the awkwardness of dining out.

— By cutting off the sleeves from his shirts, he could create nightshirts for her that would be easier to get on and off.

— And after she walked away from home once, and was found by a neighbor four blocks away, he put a wristband on her with his cellphone number. That would make it easier to reach him, rather than having someone try to track him down through their home address.

One of the hardest parts, however, was the social adjustment, he said, since even longtime friends no longer knew what to say or do. “The worst part is that people don’t know how to relate” to the situation, he said.

NUMBERS

That’s why he’s working so hard on drafting a state law that would mandate information from health providers immediately after a diagnosis — so patients and caregivers won’t be trying to figure it out for themselves. That’s especially important as the numbers rise.

According to the Alzheimer’s Association, Iowa now has 64,000 people ages 65 and older with the disease. By 2025, that’s expected to climb to 73,000 people.

Across the United States, more than 5 million people are living with Alzheimer’s, and those numbers are expected to reach 16 million by 2050. Cost of care is estimated at $259 billion this year across the nation, potentially increasing to $1.1 trillion in today’s dollars, by 2050.

In Iowa, the Alzheimer’s Association said the disease is the sixth leading cause of death. And in 2016, the state had 135,000 caregivers like Bice, providing 154 million hours of unpaid care, valued at $1.945 billion. (alz.org/facts)

The cost of care carries another high price for Iowa’s family caregivers, translating to $93 million in higher health care costs. Bice said many caregivers have a heart attack 30 to 45 days after their loved one dies.

“When you’re working 24/7, all your juices are flowing,” he said. “When she’d sneeze, I’d be awake. It’s an adjustment to the body.”

He had his own health scare that wasn’t a heart attack, but his heart did go out of rhythm. He knew something was wrong, drove to the doctor’s office, then rode an ambulance to the hospital, where his heart was shocked back into a normal rhythm.

VOLUNTEERING

Building on all of his experiences and energy, he “immediately” became an advocate for the Alzheimer’s Association, and participated in the fundraising and awareness walk that following September.

Now he spends about 10 hours a week attending meetings, calling on people affected by the disease, and calling on elected officials to increase funding and education.

Most gratifying, he said, is “all of the opportunities available to do something for future generations that’s never been done before.”

That’s a tradition handed down by his father, who stressed: “Whatever you’ve been given, if you give it back, it’ll double.”

Bice has built his life around that philosophy, dating back to his high school days as class president, state 4-H officer and more.

“It’s through giving that we have living,” he said.